Two voices, one dream*
Emma Wambui and Rebecca Murunga have personal experience of the challenges faced by people with disabilities in Kenya. In their role as Sense International1 Ambassadors, they are using their knowledge and passion to increase support for deafblind people and their families – and create change across the country.
Emma lives in Nakuru County, around three hours north-west of the Kenyan capital, Nairobi. She lost her sight and hearing in 2008 – and it changed her world completely.
“What does it feel like to be a deafblind person in Kenya? It’s crazy. I immediately lost my two senses; they almost went away at the same time. My parents were totally confused; totally, totally confused. My friends could not understand me anymore and I had to look for new friends and explain to them how to treat me.”
The challenges Emma faces – those of isolation, loneliness and communicating with family and friends – are similar all over the world. But life in Kenya can pose other, terrifying risks.
“There is a big issue of rape cases in Kenya. And the people who are being targeted are persons with disabilities – especially the deafblind and people with mental health problems. It almost happened to me one day but I thank God because I was rescued by a good Samaritan. It’s so risky in Kenya.”
It is estimated that 17,000 people who are deafblind live in Kenya. Families of deafblind children face specific practical and emotional problems – and disability is still stigmatised.
Rebecca’s daughter Abigail is 19 and is deafblind. “Whenever I move around with my daughter, everything stops; everyone is staring at her,” she says. “Of course, there is sympathy but you don’t really want it. I want to take Abigail with me wherever I go but it is a challenge.”
One of the biggest issues that Rebecca faces is identifying and getting the support Abigail needs. This was particularly the case when Abigail was younger.
“There are times when I don’t really understand what Abigail wants because her communication hasn’t developed – because we had no support when she was little. Although she is 19, she struggles with simple daily activities; at home, Abigail spends a lot of time lying in bed, covering herself up.”
Sense International – a turning point
“Sense International understood Abigail, they knew how to reach out to her, and they had programmes that could help her,” says Rebecca, who is now coordinator of the Parents of Deafblind Organisation in Burgomo County. “They embraced our parents’ organisation and brought us together, which has helped us to deal with the challenges we are facing and learn from each other. At times you realise that your situation is probably better than you feel. And because of that you gather the courage to continue.”
Emma first got involved with Sense International through the Nairobi Support For Women programme. “If I didn’t meet Sense International, I don’t even want to imagine where I’d be…” she says. “Life felt hopeless but when I came into contact with them, that’s when I decided no, I have to live a positive life.”
This support gave Emma the confidence to forge a career in community development. “The platform I was given, the support, talking to my parents, talking to the people around me; it was life-changing. Meeting the team and other deafblind people in Nairobi gave me that courage.”
Campaigning for change
Rebecca and Emma are heavily involved in advocacy and raising awareness of disability – and both are passionate about improving life for deafblind people in their country.
“We’ve trained in advocacy and the rights of deafblind people,” says Rebecca. “We’ve then been able to meet different government organisations and explain how they can help the lives of the deafblind people to be better and a little easier.”
“Currently, we have a bill going through the County Assembly: the Nakuru County Persons with a Disability Bill,” says Emma. “It is a huge document that covers many important issues; health, for example, because there is a lack of trained doctors and nurses who know how to treat and communicate with deafblind people. The bill also includes education, accessibility, access to information and employment. I hope it will be made law this year.”
For Rebecca, education is an issue close to her heart. “Education and schooling is very, very important. We worked with the Kenya Institute of Curriculum Development to develop a new curriculum programme that is now being used across Kenya. Teachers have been trained to support children who are deafblind, and there is now an outline that all teachers use. Abigail is following this new curriculum and she is enjoying it very well!”
Emma and Rebecca are positive about the future, but acknowledge that there is still much that needs to change. “I know there are so many other deafblind people out there. People who are hoping and praying and crying for someone to come and give them hope and a reason to live, a reason to smile,” says Emma. “This is why Sense International’s work is so important; it gives people in Kenya hope.”
To find out more about Sense International’s work in Kenya visit www.senseinternational.org.uk/our-work/kenya
Early intervention is vital
Sense International’s Finding Grace campaign aims to screen 300,000 infants in Kenya and Uganda to ensure that deafblind children are identified and receive the support they need in the crucial early years of development. Rebecca explains the difference early support will make:
“Early intervention is so important. When Abigail was young I didn’t know about what help could be given to her. If I did, Abigail would be doing so much more than she’s able to do now.
The Finding Grace appeal will go a long way in helping deafblind children to be more independent, understand how to live with deafblindness and be part of the community. Because once a child gets that early intervention, they will be able to go to school, they will be able to graduate on to vocational school, they’ll be able to acquire a skill.
I really long that other families are able to get services early enough so that they don’t have to go through what we have gone through. Once there is an early intervention programme, then it won’t be as bad as it is right now in Kenya.”
* This article was originally published in the Summer 2015 edition of Talking Sense Magazine, a publication of Sense2
1 www.senseinternational.org.uk. Sense International is a small corporate member of DbI.